Ashlee Rose :Tell us about yourself.
Kimberly: My name is Kimberly Hastings- I’m a wife, Mom, sister, daughter.. the list could go on and on. My family is my top priority in life and love. I fill my days as the Manager of Alumni Relations for Midwestern University. My weekends are filled with family- either on the soccer field with Colt or at the baseball diamond cheering on my oldest son, Brody and the occasional sushi date night with my hubby, Jay.
Ashlee Rose:How old was your son when he was diagnosed with a hearing loss? Was the cause discovered?
Kimberly: Colt was diagnosed with a hearing loss within a few hours of being born. We learned of his loss at his newborn screening. Colt’s cause was never determined, although we did every test we could, including the DNA test to see if the loss was hereditary, it wasn’t. Dr. Macias, Colt’s surgeon who implanted Colt told us we would never know why, but he was confident cochlear implants would change Colt’s world and ours. He was absolutely right.
Ashlee Rose: How did you feel when you first found out about his hearing loss?
Kimberly: My husband and I were devastated to learn Colt was profoundly deaf. We were in disbelief as neither of us have a history of hearing loss. To hear your child can only hear a jet engine is not what any parent ever wants to hear. We immediately turned our devastation into finding answers.
Ashlee Rose:What approach did you and your husband take?
Kimberly:We learned that asking questions and researching would lead us in the right direction. We discovered Desert Voices Oral Learning Center, a local nonprofit which changed our lives and gave us a sense of community. Colt started with speech therapy a few hours a week when he was only a few months old and eventually he was a full time student, even graduating when he was five years old. When Colt was 5 months old, we first tried hearing aids hoping and praying Colt would respond. Unfortunately, Colt’s loss is so severe that hearing aids didn’t help and our second option was cochlear implants. Colt was just under two when he received his first cochlear implant. He immediately responded and there were many tears of joy. When Colt was just under five years old, he received his second cochlear implant. Colt worked very hard putting in six hours a day at Desert Voices to learn to hear and speak and thanks to his hard work, Colt was mainstreamed into the public school system at six years old.
Ashlee Rose:How was the process of getting Cochlear implants and the results? Does he enjoy going to audiology? Speech and school?
Kimberly: Surgery is never easy, but we were confident the surgery would be a success. And both times, Colt responded beautifully to his cochlear implants. Life really is a journey and it’s the same with cochlear implants. The implants were the tool and it was Colt’s dedication and hard work along with Desert Voices teachers and speech therapists that gave Colt a voice and taught him to hear. Due to everyone’s determination and focusing on the positive, to this day Colt is a typical 9 year old little boy. The best compliment we hear is that “we would never know Colt has a hearing loss if we didn’t see his cochlear implants.” Colt’s speech is so clear and his ability to hear even the slightest sounds amaze us every day.
Ashlee Rose: Tell us about Colt, where is he at with school, friends, and sports? What does he want to be when he grows up?
Kimberly: Colt’s in third grade at Legend Springs Elementary- he’s a straight A student. His favorite class is Math and just recently his Music class introduced violins and while it’s challenging, Colt’s loving it. When he’s not in school, you can find him in his Neymar jersey on the soccer field. He’s extremely competitive and is a natural athlete. Colt’s also the life of the party- he gets along with everyone and we hear time and time again how kind he is to all his classmates. Ever since Colt was a baby he’s been intrigued and told us he would be a pilot- at nine that’s still his dream job!
Ashlee Rose:Does he have any special equipment or devices for schooling or sports during practices and games?
Kimberly: Colt’s school, Legend Springs Elementary was so gracious with the transition to public school- in Kinder, Colt found success with the teacher wearing an FM system. Colt also utilizes a mini mic that has helped assist when the use of headphones is required. When Colt plays soccer he wears an Under Armour headband to help keep his implants on.
Ashlee Rose: While he was growing up, was there a significant moment you would like to share with us? (Colt, devices, audiology, school/sport or parenting :anything )
Kimberly: One defining moment that I like to share is when Colt was implanted with his second implant and we arrived at the audiologist for the activation. It’s always an anxious time, but as soon as the implant was activated, Colt proclaimed “ I do hear it.” Four words that forever changed our lives! And what made the activation even more special was I recorded it and Colt’s Grandma was able share in the joyous moment. To this day, every time I see an activation video I tear up. It’s the first step of a long journey and I can truly say the good outweighs the bad.
Ashlee Rose: Is there a favorite quote you would like to share with us? Also, what advice would you like to give to other parents of deaf and hard of hearing and deaf individuals?(Also, does Colt have an advice? Any inspiring message to share with others)
Kimberly: Colt’s advice is to always have fun. This kid can find the positive in nearly every situation. He’s actually taught our entire family and friends about what life is all about. Things won’t always go as you plan, but every day is a choice and we’re always going to be a “glass half full family.” To those parent’s starting the journey, beginnings are always scary, but find the path that works and its different for every family. It took me years to be able to share Colt’s story without stopping because of tears and frustration. To this day, I’m proud to share his story and his successes. While we never planned for this, we took for granted life would be perfect- we’re truly blessed to have met incredible families who we’ve laughed, cried and celebrated together. We can’t wait to see where this journey will take Colt and we know nothing will hold him back!
Ashlee Rose:Tell us about yourselves
Amanda: I was born and raised in Brooklyn, NY. I love photography, ceramics and traveling.
Gil: I was born and raised in Birmingham, Alabama. I love hunting, fishing, running, and being with outdoors with our children.
Ashlee Rose:How old were each of you when diagnosed with a hearing loss? Do you know what caused it? What path did you each go on?
Amanda: My parents found out that I was deaf when I was 6 months old. My mom did sense that something was wrong but the pediatrician brushed it off and didn’t listen to my mom. She put me down for a nap and after a while she started to vacuum without realizing it and then she quickly turned it off so she wouldn’t wake me up but then realized it didn’t wake me up either. She asked my dad to play the saxophone over my crib. He did and I was sleeping soundly. She found an ad in the newspaper for the League for the Hard of Hearing and gave them a call. They gave me hearing aids and immediately put me in speech therapy. My mom did not want to implant me because it was experimental at the time. They encouraged her to teach me how to speak before sign. My mom also put me in mainstream school with an interpreter and notetaker. She always made sure I wasn’t alone and that I was around Deaf kids too.
Gil: I was sick with meningitis at 18 months old. I was in coma for three days and became deaf afterwards too. I had to start all over - learning how to walk, eat/drink and to talk again. They also gave me speech therapy too. I was hard of hearing and was doing very well with hearing aids. I was in mainstream high school but did not have an interpreter or notetaker but did use a lot of tutoring.
Ashlee Rose:How old were you guys when you each received a Cochlear implant and what inspired you guys to seek one?
Amanda (22years old): I took a Deaf History class and the professor put us on a debate team for the Cochlear implant - Pros and Cons. I was on the Pros and learned so much more about it. I thought it was too late for me to get one but I saw that it benefited a lot of Deaf people (after hard work). I was a little anxious about graduating from college and being out in the “hearing world” - especially with work. I am So happy that I got one. It has helped me understand so many people - especially strangers.
Gil(23 years old): My hearing got worse in college and I saw how well Amanda was doing with it- it motivated me to get one for myself. I hated it at first but it was the only thing I had to help me hear better. I went to Johns Hopkins to get it mapped and they did it so much better.
Ashlee Rose:What do you like and do not like about your Cochlear implants/devices?
Both: At first we both hated it - the beeps and the mechanical sounds really bothered us and it was hard for us to get used to it. We love it that we can hear better than our hearing aids and having a remote control makes a huge difference especially in a noisy environment. The bluetooth phone clip helps Gil so much with talking on the phone. Right now, it’s painful to wear implants around children - they like to take it from us and throw it and the screaming and yelling is hard to hear too. We also noticed that when someone puts the water on - it really cancels someone’s voice and we can’t hear well over that.
Ashlee Rose:What are your work experiences? Do you receive accommodations? Any struggles?
Amanda: When I worked at the Census - I was blessed to have a full time staff interpreter and a Videophone. Every Tuesdays we would have ASL lunch in the cafeteria. Having Deaf friends from other parts of the building was a blessing too. It made me feel like I belonged.
Gil: I work at an agency where they don’t allow cell phones and video phones are restricted too. They do provide an interpreter for me sometimes but I do well with my implant and my coworkers are extremely supportive of me.
Ashlee Rose:How did you guys meet?
Amanda and Gil:We both met through a mutual friend at RIT. We met at the very first floor of our dorm building. We were good friends for a whole year before we started dating.
Ashlee Rose:You are parents of three beautiful children! Were you nervous about becoming parents? Did you get devices for home that signals you both when your children needs you?
Amanda and Gil: Thank you! YES, of course we were nervous - thank God for the sonic boom alarm clock with the Crying Signalr device that shakes our bed when the baby cries. The problem with it - sometimes we turn it off during the day and we forget to put it back on at night. It was so devastating for us. We made a promise to never turn it off and just leave it on. We love to be able to hear them calling for us, laughing and crying with our implants. I do worry that we won’t be able to communicate well or that we will be left out but we are taking one day at time.
Ashlee Rose: Do your children know sign language? Are they aware that you two have a hearing loss? Are there any special ways you communicate with each other?
Amanda and Gil:Our daughter gets frustrated when we don’t understand her. She would say “I’m done telling you!” She doesn’t understand we are Deaf sometimes no matter how hard we explain it to her. We have tried to teach them sign language but they don’t see to be that interested in it right now. We are not pushing it right now because we want to make sure they develop their speech in case they like sign language too much.
Ashlee Rose:What advice would you give to parents who have deaf /Hard of hearing, deaf parents and deaf individuals?
Amanda and Gil:Their advice: Do whatever works for YOU. I wish I found more books on reading to them about our Deafness at the beginning and I do wish I could get together with other Deaf parents with CODAS. We live in an area that is far from a lot of things and its harder to get together with other Deafies.
Ashlee Rose: Tell us about yourself
Bridget:I'm originally from NW Iowa, but Kansas City, Missouri has been my home for many years. I'm fortunate to be close to my immediate family - both in terms of location as well as relationships. My parents are Joseph and Rae Jean, and as of January 18, 2019, they will have been married for 44 years. I have an older brother named Brandon, and he has two sons named Chase (14) and Ty (10). My sister's name is Erica, and we have always been close; we actually teach at the same high school. I have an incredibly supportive boyfriend named Michael; he is handsome and smart, and best of all, his logic helps keep me grounded. I love supporting our Kansas City Chiefs (they have a playoff game this Sunday-Go Chiefs), Royals, and enjoying all of our fabulous Kansas City BBQ!
Ashlee Rose:What do you do?
Bridget: I am a high school English Langage Arts (ELA) teacher. I currently teach English I and English IV, which is most typically freshmen and seniors. I have been teaching at Fort Osage High School (FOHS) since 2013, which is in the Kansas City metropolitan area. I am also an assistant track and field coach at FOHS since 2014; I coach long jump, triple jump, and javelin.
Ashlee Rose:How old were you when you were diagnosed with a hearing loss? What kind of hearing loss do you have?
Bridget:I was 21-years-old when I was first told by an audiologist that I needed to wear hearing aids. I remember that he said he was surprised that I had been successful in college, and that my initial reaction was, "How embarrassing..." which resulted in tears. Fortunately, I now know that hearing aids are nothing to be embarrassed about. I have Reverse Slope (RS) Moderate to Severe Congenital Bilateral Rising Severe Sensorineural Hearing Loss (SNHL); at the age of 36, I am currently at 50% bilateral hearing loss. RSHL is far less common, and it can be a bit more challenging for my audiologist to program my hearing aids.
Ashlee Rose:Do you have a family history with a hearing loss?
Bridget:Yes, on the paternal side of my family. My dad's mom, Grandma Mary, had the cochlear implant as a study patient in Iowa City about 12 years ago. She actually just got an updated one; she now has the Cochlear Nucleus 7 Sound Processor. In addition, my hearing loss is very similar to that of my dad's sister, Jane. It would be interesting to know how my hearing loss compares to my dad's, but he's stubborn. He is adamant that he can hear just fine, but might I suggest texting him rather than calling him! :)
Ashlee Rose:What do you like and do not like about you're hearing aids/ hearing loss?
Bridget:I like that I now have glittery blue custom ear molds for my BTE Phonak Bolero V70-P Hearing aids, and I like the Bluetooth wireless capability with the Phonak ComPilot. What I don't like about my hearing aids is that since I hear high pitches better, sometimes in social settings I can hear a woman's or a child's voice over the people I am trying to hear because those are the sounds I can hear best. We can't tell the hearing aids exactly what sounds to focus on, so background noises are still an issue.
Ashlee Rose:When you meet people, what is it like socializing? Are there any pet peeves or anything when it comes to communicating?
Bridget: Though I don't think it is obvious to anyone else, I certainly have anxiety about meeting people due to worrying about being able to hear. If someone is soft-spoken or if we meet in a lively atmosphere, I worry that I will struggle to hear and therefore embarrass myself. I also really dread ordering at counters like Chipotle because there are so many sound distractions, I often agree to toppings that I really don't like just to keep the line moving. My pet peeves when it comes to communicating include talking to me as you're walking away, or talking to me before you have my attention. For effective communication, I need to be able to see you speak, and I also need to be focused.
Ashlee Rose:I see you are in the process of getting a hearing service dog, how exciting! What made you want to get one? How is the process going? List the link available for others to look into your profile and donate.
Bridget: I am incredibly excited to be in the process of getting a second set of ears through a hearing notification service dog. I live alone, and I don't sleep in my hearing aids. When I woke up the morning after a stormy night, I had several texts and missed calls from concerned family and friends because they knew I wouldn't hear the storm sirens. Sure enough, after talking with some neighbors, the sirens had gone off several times throughout the night, but of course, I didn't hear them. The research I did on the service dogs, it seemed that having one would be beneficial in terms of my independence as well as my safety. Service dogs for Deaf and Hard of Hearing- they are trained to alert their owners to common sounds like doorbells, oven timers, smoke alarms, telephones, babies' cries, or alarm clocks. Overall, they are trained to make physical contact and lead their deaf partners to the source of the sound. For many reasons, I chose to go with a smaller nonprofit 501(c)(3) organization called Deafinitely Dogs! located in Cedar Rapids, Iowa. Deafinitely Dogs! really cares about the bond between the dog and its person, as opposed to seeing applicants as just a number. Service dogs are expensive; in the midwest, they cost about $25,000. Due to the high cost, I need to raise $10,000 before I will try to start matching with my future work partner. Through friends and family, we are already halfway there since September 2018. As of January 16, 2019, we still need to raise $4,520.00. There are really three ways people can support my service dog campaign: 1.) There is an active GoFundMe Link; 2.) Donations can be mailed to Deafinitely Dogs! 2121 North Towne Ln NE, Suite A, Cedar Rapids, IA 52402 with the code #0102HBE in the check memo; or 3.) Donations can be made over the phone for campaign #0102HBE by calling (319) 930-DOGS (3647). Donations go to the nonprofit as opposed to me, so donations are tax-deductible. For anyone that would like to read more about the organization, the website is https://www.deafinitelydogs.org/ .
Ashlee Rose: Do you have a favorite quote you would like to share?
Bridget: As an ELA teacher, I have many favorite quotes, but the one I would like to share is, "In a world where you can be anything, be kind."
Ashlee Rose:What advice would you give to parents who have deaf/ hard of hearing children and deaf individuals?
Bridget: My advice would be to have patience. Any time there is a struggle to communicate it can lead to frustrations. Technology keeps improving and there are more and more options for support. Learn and grow together patiently in order to reduce those frustrations.
Ashlee Rose: Tell us about yourself, hobbies, marriage life, anything you want to share about yourself.
Alexandra: I am currently a software designer for IBM and I am on the board of the AIGA Raleigh as the Director of Inclusive Design. I recently received my Master’s from NCSU College of Design where my thesis project focused on designs for a smart user interface for Cochlear Implants. I live in Raleigh, North Carolina with my husband and two rescue dogs. My professional website is: http://alexandradeangrossi.com/
Ashlee Rose:How old were you when you were diagnosed with a hearing loss? What causes it if known?
Alexandra:I was diagnosed as profoundly deaf at almost two years old. The doctors do not know what caused it. I had a complicated birth with a twin sister who died at 3 days old. We suffered from Twin-twin transfusion disorder and I suspect this played a part in my hearing loss.
Ashlee Rose:What approach did your parents take?
Alexandra: My parents didn’t know a single deaf person when they found out that I was profoundly deaf so they went into deep researching mode. They visited schools for the deaf, talked to teachers, speech pathologists, and many doctors. It wasn’t until they met a young orally deaf man who was enrolled at Harvard that they were inspired to put me on the same path he went. He was smart, charming and spoke with such confidence, that they realized that I could achieve anything I wanted to. From then on it was a matter of finding the right teachers and speech therapists who would help me thrive.
Ashlee Rose: When did you understand that you have a hearing loss?
Alexandra: For as long as I can remember, I understood that I had a hearing loss. I remember working on speech drills with my dad when I was about 3 years old. Being mainstreamed, I compared myself to mostly hearing kids and I realized then that I will always have to work harder than my hearing peers to communicate.
Ashlee Rose:Have you met any other deaf individuals while growing up?
Alexandra:While I started speech therapy when I was around 2 and a half years old, it wasn’t until I was in elementary school that I met deaf kids like me. There was an orally deaf program embedded in a public school, and my parents moved to this district so that I could enroll there. This is where I met my best friend Ashlee who was also in the same program. Our friendship was an important one during my childhood. I loved my hearing friends, but I found it invaluable to have a friend who was going through the same things as I was.
Ashlee Rose:What devices do you have?( What inspired you to get a second cochlear implant?)
Alexandra:I grew up wearing bilateral high powered hearing aids and using an FM system while in classes. Then when I was 16, having a cochlear implant became a possibility and I decided to switch from two hearing aids to one cochlear implant because that’s what my insurance company would cover at the time. Finally, when I was in my 30s I decided I really wanted to be able to have bilateral hearing again. I had to jump through hoops to get an insurance company to cover my second surgery, but I finally did it and I’m really glad to be a bionic woman in “stereo!”
Ashlee Rose:What do you do when you meet a hearing individual- when you go shopping, at a gathering or job interviews?
Alexandra: With hearing friends and family members I know well, I usually don’t think twice about tough hearing situations because they understand I need to read lips, and I feel comfortable asking them to repeat themselves. Large groups can be challenging, I prefer being in smaller groups or meeting people individually. With new friends, I will try to orchestrate our early get-togethers in a quiet setting until I am more comfortable with them.
Job interviews can be tricky since I am trying to show my most capable side. Usually, interviews are one-on-one in a quiet office, which is actually the perfect setting for me. However, my last job interview included a video conference call to go over my portfolio. In that case, I tried to talk through everything as clearly and thoroughly as possible to reduce the number of questions asked at the end. It was nerve-wracking, but I got the job after all!
Ashlee Rose: Do you get accommodations for your job? Any struggles?
Alexandra:As a software designer I work with designers and developers who are located all over the world, this means I have a lot of video conference calls with people who possess many different accents over often spotty internet with not great video quality. Early in my job, I was afraid of coming across as less-than-capable so I struggled for the first few months. When I couldn’t take it anymore, I asked for accommodations and I was pleasantly surprised to learn that I was not the only deaf IBMer. I was given a choice of a live captioner or an ASL translator. Since I never learned ASL, I went with the captioner and it has made my daily work life so much better.
Ashlee Rose: Tell us about what you do for work, project anything you want to share?
Alexandra: I consider myself an Inclusive Design activist, and I am passionate about giving a voice to users who are usually treated as “outliers.” I strongly believe that designing a more inclusive world benefits everybody. A project close to my heart is work that I have done on IDATA, an NSF grant-funded project that uses User-Centered Design to make astronomy and astronomy software accessible to Blind and Visually Impaired students.
At IBM I work on a product within the Hybrid Cloud called the Transformation Advisor. It adds code to old apps that allows the apps to be “modernized” and transported from physical servers to the cloud. IBM understands the importance of good design and I really appreciate their commitment to accessibility.
Ashlee Rose: Any advice you want to share with parents who have deaf/ hard of hearing children or deaf individuals?
Alexandra: To those raising or working with deaf kids: Don’t underestimate us, we are capable of achieving amazing things. However, we need your patience and your compassion — please recognize that we will always have to work harder than our hearing peers to do the same things.
Alexandra:To my D/deaf HOH brothers and sisters: Never be afraid to ask for help when you need it. You always deserve to understand what’s being said and your voice should always be heard.
I love to write.
(Scene:Two nights ago,it rained. My daughter and I was in my bedroom. I finished my shower, combed my hair and I placed my hand to close the sliding door curtains. I saw the rain. I was delayed because of my deaf ears. My daughter already knew it was raining. )
In the house, all doors are closed.
A daughter can hear the rain. Her mother cannot.
Her mother can see the rain. She cannot.
The daughter relies on her ears.
Sounds of her hearing world.
Her mother relies on her eyes.
Sights of her deaf world.
(She can see but did not see the rain under street light, I could because of several years observing with my own eyes and relying on my eyes).
This leads me to write soulfully.
I am a very passionate person. I always love helping people. I have been on a bridge between hearing and silent worlds, I know what it is like to be deaf.
I love working with children. I absolutely love being a mother to my daughter. I have been parenting since 2008. All stages, triumphs and difficulties. I know what it is like to be a parent
I write to share my experiences - deafness and parenting. Just because I sell Deaf Awareness t shirts, it is not a competitive style to other T-shirt companies. The importance of my business is Deaf awareness, knowledge, education and comfort. To give you hope. To make you feel inspired. To let you know you are not alone. Now, while continuing my personal blogs; I am announcing that I’ll be posting my blog interviews with deaf and hard of hearing individuals and parents of deaf and hard of hearing children to inspire each other and bring our community closer!
2019 is here. What does it mean? What is everyone doing? New Years Resolutions. This time frame is where everyone is setting their own personal goals to improve themselves and their lives. While I was growing up, my mother had us all write our own personal goals and we read our goals to each other. My mother would read our personal goals from the previous year to list our accomplishments. Of course, there were a few that we did not get to accomplished. And that is okay.
Throughout the year, I constantly check my goals and review them- my journals helps me to stay on track and even make some adjustments. I no longer have just my own personal goals. I also have parenting goals. I feel it is important to me to help my daughter achieve her own goals. She does not have personal goals. She has a lot of love for life, I want her to stay joyful, grow, learn, and discover new things. As a parent, it is important to help her with a routine, academics, social, health and well being. Do you have a child? You can set goals as a parent to help them and guide them along the way to finish off their school year nicely and start a new school grade. Advocate for their needs. Strengthen to work on their needs. I also have set another day of a week- on Wednesdays, we have a girls night- three generations: my mother, daughter and I to have dinner and chat. I decided to do another day of week just her and I to do something special to keep that bond strong since I am getting busy with my full time day job and running a business full time as well. I want her to be able to have extracurricular activities and more friends to come over or even a sleep over.(Fill up my cup, please? Coffee) . We will unlock our dreams and fly to discover what 2019 will bring us.
Also, I have been crazy busy being a full time teachers aide, running a business full time, full time single mother that there are not enough hours during the day. Right? Guilty moment, my daughter is an only child and can be very energetic. Recently, she asked me to do things with her. Right at that moment. We as a parent would say no most of the times right? Because we are busy cleaning, organizing and doing something at that moment. Instead, I have been saying "yes" right at that moment. Turned off the sink faucet when I was in middle of washing dishes. We danced. We did yoga. She actually did three different scavenger hunts. When she was ready, I was ready. It was actually a lot of fun. I read somewhere online last year that a mother tried this method, from "no" to "yes". I missed a lot of enjoyment because I would be too late by the time I was ready, we debated or argued and we can be stubborn of our time -I am not ready when she is or I am ready when she is not ready "Wait for 7 minutes?" "30 minutes". I am the discipline mother playing the two roles due to single motherhood. I was shocked how much a difference it was to say "yes" and our relationship, myself and my daughter's . Surprisingly, we haven't been stubborn of our time, I have asked her to do something with me and she did with an interest and a positive attitude. Of course, there are things I will say "no" to certain and inappropriate things! I am willing to drop my laundry basket of clean clothes that needs to be folded to do things with my daughter when she ask me at that moment to do something with her. Because I will not have much time with her when she will be busy with her social life growing up.
Here are lovely quotes to use for your goals throughout the year-
Set for your goal, be ambitious. Do what you dream, unlock your wishes. - Aaron David
Unlock your dreams, set them free to fly- Bernard Kelvin Clive
Yesterday is gone. Tomorrow has not yet come. We only have today- Mother Theresa
A journey of a thousand miles must begin with a single step- Chinese Proverb.
You are never too old to set another goal or to dream a new dream. -C.S. Lewis.
While driving to work, I realized advocacy is needed everyday and everywhere. It does not matter how old you are, if you are perfectly settled in a great school, there will be an unexpected event throughout your lifetime. Actually, it will continue to happen throughout your lifetime. When I was growing up, I lived in a perfect bubble. It was not a perfect bubble for my parents. Growing up in 1980s to 2000s, we did not have many resources like today, we did not have social media, no websites with current information, YouTube videos, bloggers, and other ways. Our way was rather old fashioned which was to drive to seek resources. Luckily, my senior year in high school on my IEP was advocacy knowledge. My teacher of the deaf educated me on my rights for the real world. There was a huge gap between early childhood setting to real world setting.
Honestly, it was frightening. I faced a bad experience at vocational rehabilitation services when I was 18 trying to get college financial support. “What do you want to be when you grow up?” I knew I wanted to work with deaf children and guide families. The counselor rejected the idea. I also had passion in designing, he rejected the idea. Few months of rejections. I did not get the help after all. I have faced discrimination by companies during interviews, a lady who was thrilled to see me and loved my resume, but she tossed the papers as soon as I told her I have a hearing loss. I did ballet, jazz, hip hop, gymnastics, cheerleading, basketball, flute,and volleyball. It was a beautiful ride! However, I was stopped by a referee at a intense basketball game, my skin was flushed. He stopped me because of my hearing aids. The coach and my parents fought for me.The crowd roared. I resumed playing. I was in high school, I faced some difficulties- movies with no subtitles and tests where I had to listened in regular academic classes.
I had anxiety.
My teacher of the Deaf fought for my rights and accommodations.
I have been advocating since my childhood for education and extracurricular activities in the real world. I found myself advocating as a mother. I advocate for my daughter, her needs and situations. She is at the age where I cannot fully advocate for her, but with my experiences, I guide her and tell her to grow through things instead of go through it. (My favorite quote: "Grow through what you go through".) There are boundaries. I guide her in what is appropriate and what is not- social communication , social media- I removed the apps- actually she removed them herself. I also advocate as single mother and as deaf.
It is everyday and everywhere.
Advocating is not only fighting for what you believe in, your rights, but it is also asking for proper help for your needs.
Be loyal to yourself, do not let others put you down.
Recently, I woke up from a dream where a lady did not want me to talk because of my speech and did not want me to proceed. It was weird, I have been at same job for the last six years and I call it a home. Maybe it was a sign, a friendly reminder on advocacy that I need to share with you guys.
It does not matter how old you are, how old your child is, where you are at- continue to advocate, be consistent, educate yourself along the way, teach your children not to give up and prepare them. My mother delivered me, she saw me take first breath and wept when she was told that her daughter is deaf at age ten months. She continues to guide me, remind me to use my backbone, and remind me that I am worthy.She will continue to walk besides me on advocacy until her last breath while my daughter will walk besides me on the other side to learn on advocacy while I can mentor her and remind her that she is worthy not to let others put her down and advocate for herself.
Here we go again, consistency is hard. Do you ever feel you work on a goal then it drifts off eventually? I have a lot of goals. I am very driven. I am obsessed with completing my duties such as mother, employee and owner. I love to help, I strive for the best, and I want to do more. I don’t want my deafness to limit me.
This is an image- me in mommy hair bun, work out clothes and sneakers to push myself and running around. My lists are getting too long. Obviously, we are back to school. Three to four hours of homework. Exhausting. Thank goodness, one of the mothers who was my roommate on girl scout camping gave me tips on online grocery shopping- I ended up ordering online a few times already to make my life easier. Guilty but loving it. Do you feel you have lunches to make, pack snacks, errands, laundry, and charging Processors/packing hearing aid batteries in bag to be secured- I can be guilty that I run low on my battery, but I am still old fashion gal and still love my disposable batteries. The “fish stickers” it excited me to peel them off!
Slow down. I stopped and realized I am back in not so balance cycle again. One moment, I will not lie. My daughter got frustrated that I could not come to her right away to help her to do something.To her, I was emotionally unavailable. I explained. There is only me. ME. To do everything by myself. There isn't a husband to help me to split the duties or to be there for us. I am picking up while I am explaining to her, I point to her there is no husband next to me so I do it all. My large mommy bun is tilting to left side slipping down away from the rubber band. And of course, the joy of communicating is telling her she needs to step up on doing her chores to relieve me and build her own independence skills (SLOWLY).
So, I pulled out a blank journal and decided to write my goals. I listed my goals. Yes, I am the mother here who is OCD with lists. If I am not organized, I’m slightly fragile. If I don’t complete the list, I feel like a failure. I realized they are just lists. It does not defines me. Balancing defines me. Again, I have to take care of myself before others so I can serve. I wrote down what I can do for myself, what can I do if I get stressed even as a mother “Go to my bedroom for 5 minutes and meditate”! It is also setting boundaries and setting myself up to be committed to myself to the best version I can be and find the outcome results.
I now have been writing my journal daily to hold me accountable, this is what I write-
I called my daughter's name a few times already, and she did not respond to me. I got frustrated with her. I told her she has a name and she should acknowledge whoever calls her name. It is rude if you do not, right? "Mommy, why do people have names?". I was puzzled. I explained to her so people can respectfully call other people names instead of saying "Hey you" and for identity rights like birth certificate and picture ID. Especially school enrollment papers. I dug deeper through research and found names were given between 500,000 to 50,000 years ago due to Christianity, burial, and conversational wise by using description. They spoke a name and it showed to respect.
Today, I learned it is not just names. I found people using descriptions of others instead of names. How offensive? It can be offensive if other people describes our disabilities and what we cannot do instead of our names first. "The girl with nasal accent who .." "The boy who has something on his head.."
Instead, it should be "Ashlee is.." and instead of pointing our flaws or what we cannot do, we can say,
"Ashlee, she owns a business. She sells Deaf Awareness apparel. She is also deaf"
"Ashlee loves to draw. She loves to help others and she really does love her family. Even though, she is deaf, she does not let things limit her!"
My daughter recently joined a Best Buddies Program. We reviewed paperwork and I really loved this one paper! "Remember to treat your buddy the way you like to be treated (The Golden Rule). It is important to use "People First Language" the disability does not define the child." The example was given, "She is a student with Down Syndrome" NOT "She is a Down Syndrome girl". I have been called "The deaf girl who is on the cheer squad" when I was in High school on a cheer-leading team. I just hope our children can prevent this and even for us as an adults to teach them and to advocate for themselves. I even would want my daughter to be called "Makayla" not "The girl who has a deaf mom". She has a name. She has good qualities. We all do.
My favorite quote these days is "If you have nothing nice to say, say nothing at all" and to follow the "Golden Rule"- treat others as you would like to be treated.
Take a picture of yourself with a name and post on Instagram with hashtag #LAR'snamemovement (LAR is for Love, Ashlee Rose in case you are wondering) and @loveashleerose to help the Golden Rule Movement. Be an advocate for yourself, for us, for our children, and for all..
Hearing Impaired single mother and teacher aide at a hearing impaired oral preschool program. An author of "Turn The Lights On, I Cant Hear You".